I often think it would be extremely positive to march on Downing Street with Placards registering our disgust at NHS treatment for thyroid conditions. If only there were some of us who felt reasonably fit enough to do this. With enough people and media involvement surely our concerns would be noticed. It would take a little while to get people interested from all over the country but it is not impossible. I just wish I was younger to set the ball rolling. Noise we need to make much more Noise!
March on Downing Street: I often think it would... - Thyroid UK
March on Downing Street
Written by
Joyia
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32 Replies
•
Endometriosis Awareness were marching down the Victoria Embankment in the general direction of Downing Street last Saturday afternoon.
When I saw them, I had the same thought as you.
See my response below.
After there is a new government -'if it looks like lasting ,maybe. The powers that be are complacent .All is well.
I had an idea that maybe we could write a letter or email with all the facts about thyroid treatment and what changes we would like and send it to Panarama at the BBC.As someone posted on here about a woman in the USA who is going to do a documentary maybe the BBC would be interested in doing one.They say they cannot read all their mail ,so if we heard nothing from our first letter then we could all copy it and send it out in force.
PS of course we would need someone who is good at writting letters to do this.Any thoughts on this idea .
shawsAdministrator
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Thanks shaws for the pointer and yes Lizzy getting Panorama involved would be hugely influencing. We definitely need much more intensive publicity for the parlous state of affairs so many are experiencing and as NHS current guidance appears to put the onus of treatment back onto our GPs it leaves an even dire situation. Years ago I would have relished campaigning but must leave it to younger people who may still have the strength to fight, I would most certainly manage to get to Downing Street though and hold up a placard! I wonder if any interest could be provoked on Facebook as they appear to attract more people than most, not just a thyroid page but a campaigning page. Once again due to age I would not know how to go about this nor have the energy, but somebody might.
The problem is the number of powerful and influential individuals who work either in or connected to the health service who are undoubtedly in receipt of brown envelopes. They will do anything to protect both their egos and their wallets.
Too many are frightened to challenge the status quo and too many don't bl**dy well care.
It won't get better, only worse particularly if the Eton mafia are voted in again.
Margo• in reply to
I completely agree with you cinnamon_girl, the pharmaceutical companies control the world, however I don't believe the Eton Mafia would make the situation worse, my thoughts are the other way. Whoever wins I agree with you the situation won't get better.
Polaris• in reply to
"BMJ editor-in-chief Dr Fiona Godlee said pharmaceutical companies should not be able to block access to alternative drugs."
"Doctors' leaders also need to sort out the web of misinformation about drug prescribing that has been generated behind closed doors. and is costing the NHS hundreds of millions of pounds a year by scaring doctors from using cheap and effective medicines."
• in reply toPolaris
Linky not working Polaris.
We mustn't give up cinnamon, it is amazing once something gets enough publicity how that can have a knock on effect, I just wonder if we have been aiming high enough. Petitions are all very well but to even get a mention in Parliament there has to be 100,000 signatures and then it is not viable for a full debate. Perhaps we should chain ourselves to some railings are something dramatic to draw attention to the media!
• in reply toJoyia
Joyia - it's not giving up but there has been plenty of publicity on thyroid disorders over the last few years in national newspapers including broadsheets.
As this is a predominantly female condition, it's far easier to label us as hypochondriacs and/or menopausal.
The very people who should be helping us are failing to do so - we have GPs with inadequate training, are incapable of thinking for themselves and would far rather treat us with contempt. And they receive a six figure salary.
Sorry, I'll stop now but will just say that I'm still fighting, am waiting to hear from the Health Ombudsman and that will not be the end of it.
There has been publicity, but it looks to me as if (to take one very obvious example) diabetes mellitus is mentioned far, far more often. Further, whereas "everyone" appears to understand that treatment of diabetes requires regular testing, self-injection, with a real possibility of hypo- or hyper-glycaemia - thyroid is forever "take a little white pill every day".
As a male here, I quite often feel invisible to the medical establishment.
Joyia• in reply to
I understand what you are saying cinnamon and agree there has been much publicity on the thyroid condition within articles written for various newspapers/magazines etc. over the years, this obviously hasn't been enough to gain attention and was thinking more of moving in a different direction via tv or people marching power.
Helvella you are most certainly not invisible to us, you are such a valuable human being to our thyroid world.
This would be brilliant! Only I can't walk for more than 10 mins, I'd be curled up in a ball feeling awful. I wonder if this is why this hasn't been done yet, before getting ill I'd often go on protests and fund raising marches.
I like the panorama idea a lot.
Many years ago I worked in Whitehall and I know that politicians will seek advice from 'experts' with regard to any issue that needs specialist knowledge. That is why we are stuck; the medical establishment has a different view.
Did anyone notice a few months ago that the Labour party are pledging to insist all GPs follow NICE guidelines to the letter to save money? Not encouraging. We need some reforming zealots, but I'm not sure where to find them.
Perhaps we could all take out membership of the Monster Raving Lunatic Party - seems quite appropriate - and insist they campaign on thyroid issues 
The USA seem to be so far ahead of us. Groups like Stop the Thyroid Madness, the Butterfly Nation Project to name a couple. Surely there are some medics here who would raise their voices, Dr Peatfield maybe, and there must be others who've clashed with the GMC?
Caring doctors need to gang together and fight for us. Most doctors would not as they are receiving quite a nice salary for keeping quite and fobbing us off.
Trouble is the rare medics who support us place their livelihoods and reputations in jeopardy, look what happened to Dr. Skinner.
I can understand their point of view, but a bit of honesty would no go amiss. How can having seen approx. 40 doctors (approx. 20 in one fell swoop at the Royal London Hospital), not have given me an answer to my skin problem soon after starting Mercury Pharma Levothyroxine. Trying the rest of the generics in UK have not resolved this problem.
Jbee have a google for histamine intolerance, this is a subject I am looking at closely as I have many allergies, apparently it can be the cause of many health problems including skin issues but is not widely recognised by the general medical profession. I have been reading some very interesting information.
shawsAdministrator
First of all, we are very, very fortunate to have Thyroiduk.org.uk started by Lyn Mynot who should be approached as none of us would be either gaining knowledge or have this forum whatsoever.
I am sure Lyn will have some good points of view as she's been at the forefront for a long time now.
If one person (originally 3 -two of whom are quite ill) took a case to the Scottish Parliament, should we be able to do so to the English Parliament?
If we aren't members of Thyroiduk.org.uk you can become one for the cost of £20 per year or £15 concession otherwise I am doubtful I, for one, would be well.
Well said shaws, so many of us are grateful for this forum and the invigilators.
Thyroid UK are very much appreciated, as is this forum, I'd be lost without both. In no way was I trying to undermine these when mentioning the american groups.
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